“Us” vs “them”: the under-served patient speaks up

I asked permission to republish this letter written by patient advocate and health policy attorney Erin Gilmer, who’s now living in poverty brought about by debilitating chronic illnesses.

Erin offers a unique patient perspective in this letter to the organizers of the annual Medicine X conference at Stanford University. After writing her letter, she was subsequently invited to speak at Medicine X 2014. Although not well enough to travel to California in person after recovering from spinal surgery, she was thrilled when Medicine X organizers offered to put together an edited recording of her presentation to be shown to both live and online audiences on September 5th, 2014. You can watch it here.

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“Dear Medicine X Conference organizers,

“Your upcoming healthcare conference forum on under-served populations brings up a concern for me that I hope you will consider in the next few months. The best way I can explain my concern is through this example:

“A few years ago, my county had a forum to develop their Community Health Improvement Plan and develop solutions to:

increase access to healthy foods

address mental health and primary health gaps

improve transportation

decrease obesity

“These were pre-set objectives set by some bureaucratic process unknown to me. I got an invite to attend the meetings to develop policy, and so I went – not in a professional capacity, but as an ordinary citizen who will be directly affected by these policies.

“Having no car, I took the bus to get there, even though the bus line doesn’t drop off within a half mile of the meeting venue. I showed up to see all attendees were representatives of non-profit advocacy groups. And when we started, the County Commissioner gave a speech about how great it was that we were all there to “help the under-served in our city and county”, how THEY needed US to help them, how the things WE would do there to help THEM would be so great.

“I raised my hand and asked:

“Could we stop talking about ‘us vs. them’ because I’m the ‘them’ you are talking about. I am on food stamps and have no money for a car.”

“It is only because I am a white woman with an education who knew someone who knew about these meetings that I was able to almost sneak in ‘undercover’.

“I see both sides really. I come from the privilege of being an educated white woman, and from a background and culture where it was okay to question and fight for what I want. I knew the correct jargon, and after so much time in hospitals have enough knowledge on what to ask for and fight for. I have the privilege of having clothes that ‘disguise’ me as having money from my former career days. I have the privilege most of the time of people who don’t ‘see’ my disabilities (although when they find out, that privilege is lost).

“It could be any of the people in that meeting room who end up in my circumstances for a number of reasons – which often includes struggles in health. Our privilege may help us through in many ways, but it will not entirely keep us from experiencing what too many who go without can face.

“The under-served are not separate or different from us. We don’t need to make others feel guilty about having privilege as much as we should realize that we are all the same.

“That day, I was appalled at how separated the people who were at this meeting are from the people they were ostensibly helping.

“They said they ran focus groups – which I hadn’t heard of. They started developing policy that made no sense. Policy that no person I come into contact with at the bus stop on the east and poorest and highest crime area in town would understand or probably choose for themselves.

“But these people weren’t included in these discussions in any real way. In fact, when I asked why we were using the language we started developing for the policy, the attendees pointed out to me that we weren’t writing for those people to understand the policy, it was just that the policy would help them.

“I fought back and lost – any person (whether on the street or in an office) should be able to read and understand the policy we were writing. I was met with bewilderment that the actual words used should be accessible in themselves.

“That said, at healthcare conferences where the topic being discussed is under-served populations, we need to invite the patients/people who are under-served into these discussions.

“We need it not to be ‘us vs them’. Again, any one of us can be the ‘them’ (the under-served) at any time.

“Because some of us have been the ‘them’.

“Because these individuals deserve to voice their needs and wants instead of having these needs and wants prescribed for them by others.

“I am a ‘them’ in that I am in a completely constrained environment which creates huge barriers to access care, to engage in these types of discussions, and just to live. For example:

I haven’t had money in years despite all my efforts to work with my disabilities, pretending to have no limitations.

I am on disability at $875/month and food stamps at $189/month when my rent is $875 and food stamps do not last the whole month.

I worry about whether I should try to get a prescription or pay my electric bill.

I have not had access to any care in the last three years except the care offered at a hospital ER or through the pity and generosity of providers.

I have only been able to engage in national discussions and conferences because of the kindness of conference leaders and others with the means to help me have a voice.

I was recently approved for the Medicare Low Income Subsidy (LIS) for Part D subsidy for prescription medicines and as a Qualified Medicare Beneficiary (QMB) as part of the Medicare Savings Program (MSP) for hospital and doctor services – programs that I used to train people how to sign up for. I will have to surreptitiously remain on prescription assistance programs to get insulin (but I can’t find one for the needles I need or for the inhaler I’ve been waiting for). On LIS, the medicines would still cost $250 per month – a cost I can’t afford.

I go to food pantries that don’t have the gluten-free food that I need (celiac disease).

I wait for hours for intake interviews for limited services (which, when it comes to rental assistance, my apartment complex has refused to accept).

I fought with our city bus system about raising fares, about buses that seem to run late only on the east (a.k.a. poor and minority) side of town, and about the QR codes they put up at bus stops while taking down the actual posted schedule – when no one on the buses I ride even knows how to use a QR code.

“I feel weird saying I’m the under-served, but I am.

“Before I was approved for Medicare, I was one of the 1 million people in my state who fall into a gap where we can’t get medical insurance because the state refuses to expand Medicaid, and where I made too much (you have to make less than $721 per month) to get Medicaid while disabled, and too little for the ACA subsidies. I’ve had to explain that countless times to hospital workers who assumed that ACA covered everyone.

“I live with the ‘what ifs?’ that most other under-served people fear. The “what ifs” of lacking privilege.

What if they can’t access medical tests or treatments?

What if they’re afraid to ask questions or speak up to the doctor?

What if recovery is impaired by personal circumstance?

What if they are alone and don’t have family or friends to support them?

“I still have many privileges – but what if I didn’t know about the MSP and Low Income Subsidy and how to apply?

What if I didn’t know to file a complaint to get a fast track when I found out the application process would take 45 dayseven though I need care now (having been in the hospital twice last month)?

What if I didn’t know to call Medicare to ask about a prescription drug plan?

What if I didn’t know how to use my computer to find the information for the LINET program when I found out there was a problem processing my Part D subsidy in time?

What if I didn’t follow up with the corporate offices of the pharmacy I went to get a response as to why they couldn’t figure out the LINET program for which I provided them all the information?

What if I had just given up? (I don’t have the option of giving up, honestly. I have Type 1 diabetes and will die without insulin).

“During the months I didn’t know how the system worked, I lived in the ‘what ifs’. I ended up waiting in longer lines at food pantries – until I found out that you could go to multiple locations at different times and you could ask for assistance at different offices because each office had separate funding.

“I didn’t know I could file a complaint to have my case looked at sooner, or how much documentation to send.

“I didn’t know all the places to call to get help. And even knowing these, it’s not enough – I always have to learn new things.

“The months when I couldn’t figure it out, I would disguise myself in my nice white girl clothes and go to a salad bar and ask for a new plate as if I’d already paid. I’d sneak toilet paper I could steal from various locations into my bag. I’m not proud of it, but the ‘what ifs’ happened and they opened my eyes.

“In all honesty, I do not joke that the system is set up to make people quitand, in the macabre sense, to make them die.

“It is the survival of the fittest. People do die along the way because of these ‘what ifs’. Just like veterans die on long waiting lists, patients who have nothing also die trying to get food, medicine, housing and medical care. And if you don’t die along the way, you honestly wish you could – because it is so very hard to get through. So exhausting, frustrating, degrading for those who already have the least.

“It could be worse for me – I could speak only Spanish and have a lot of children and no education. I could have a severe mobility disability and wonder how I’m going to get to the disability charity where the closest bus stop doesn’t have a sidewalk for the half mile to it in a city that is more concerned about bike lanes and rail lines that go nowhere than accommodating the poor and sick.

“So when I think about what will be presented at healthcare conferences and in discussions about serving the ‘under-served’, I am frustrated by the prescriptions and “solutions” offered. I don’t want an app to tell me how to track my fitness goals – but that’s what is popular. Digital medication reminders are not what I need when I’m poor and can’t afford medicine.

“I see apps for prenatal care in Africa, but wonder why I and my fellow passengers are going to get skin cancer sitting in the sun on a 100 degree day waiting for a bus that’s late at an uncovered bus stop, next to a lady who is concerned she won’t have time to make it to the food pantry and then to kindergarten to register her child who is patiently waiting beside her (unlike the kids I’ve babysat who can’t wait for anything).

“I’m ranting and going on and could go on more. While it is therapeutic for me to say this all,the real point is to open our eyes.

“If healthcare conferences are going to host panel discussions about serving the under-served, can you invite people to speak who have nothing but a voice?

“I’ve seen this work! A Latino healthcare forum here sent out a wide notice to people in the area about development of the new community center they are building on the east side. It is desperately needed and they asked people to come and give input on what services should be provided, the design of the center, hours of operation, transportation to the clinic, every aspect that would affect the population seeking care. They listened.

“And these people had the greatest insight. All they had to do was be asked to participate. They want to have their voice heard. They are us – they are our neighbors and community members. We aren’t serving them. They – like all patients, like all stakeholders – should be included in the discussion. They aren’t too crazy or under-educated to participate as may be the stigma.

“I hope maybe Medicine X 2014 can be the first to include everyone, as you have included so many thus far. You are leaders, and you still have an opportunity to lead.”

I have worked with underserved and marginalized populations for many years. I have always tried to include the consumer voice to drive services. (I worked as a psychiatric social worker.) Little did I know that I would be among the underserved and marginalized myself due to a chronic illness.

As other people here have commented, I am one boyfriend away from the writer’s situation. I can also pass for being “well” and “a nice white lady”. I thought I understood the plight of those who are on the outside but you never do completely until you are on the outside yourself. I have a few more resources than other people in my situation so I am very fortunate but, with continued illness, this could be no more.

The writer and the commenters have expressed so well what many people are faced with. The insurance and SS disability systems are a set up for desperation and failure. Needed healthcare, food and shelter services are maddeningly bureaucratic.

And yet, I have hope that we will be heard. We just have to do the best we can to find happiness where we can and NEVER stop speaking out……..

Thanks for this, Kathleen. “Little did I know…” could well be the title of this post. How ironic that a former psychiatric social worker like you ends up with an illness serious enough to transform you into one of the marginalized yourself. No matter how informed we think we are about another’s plight, we can NEVER know the reality until we walk in their shoes. I wrote about this in Healthy Privilege: When You Just Can’t Imagine Being Sick.

Reblogged this on Nurse's Links to Resources and commented:“Another eye opening article from Heart Sisters. Please Read & Share! The fight for affordable, accessible healthcare for ALL Americans still has not happened! There are still too many gaps and loopholes in the ACA. The Hobby Lobby ruling has weakened it even further. There are other upcoming challenges that could weaken or destroy it even more.”

In order for my husband to access his “guaranteed” VA benefits, we would have to get a divorce, I make too much money, by about $50 a month.

I work with the Medicare system and have seen many loving couples who have had to divorce to qualify for Medicaid or both of them would lose everything they have worked for all their lives. Sad state of affairs to be that close to losing it all.

How many people now have insurance that they are mandated to have, but still not be able to access that care because they just spent their money on the premiums? Sure they get their routine check ups, etc. But when it really counts, that illness, accident or heart attack can ruin them. No co-pay or co-insurance funds.

“I think this is VERY important, someone thought it important enough to share it with me, I want to share it with all of you….hopefully, you can share it…and the world will realize it shouldn’t be ‘Us’ vs ‘Them’! Let’s talk about it until everyone listens!”

And what a piece of luck for me that, when I was no longer able to continue in my job, he was able to switch from freelance to fulltime work with pretty decent insurance (all things considered…) as it used to be MY job that covered all that.

Even so, I often feel that I “pass” in social and medical situations on the basis of my education, connections from another point in life, and I sometimes struggle to keep up appearances. Even with those advantages I have had to wage what amounts to a military campaign to get appropriate health care.

The system is designed to make most people give up. And many will die, many DO die, only slowly and miserably and probably the official cause of death will point to their own failure to take care of themselves.

Love that Kathleen: “I’m one husband away from exactly what she describes…” Many of us could say the same thing about “one paycheque” or “one car accident” or “one health crisis”. In my former life working in PR for the Salvation Army, I met countless people living on the street or in our shelter who used to teach university, or run a business, or have wives and kids and holidays in Disneyland. There’s a story behind every panhandler begging for change. What I learned from my Sally Ann experience: all that good stuff we take for granted can vanish in a heartbeat for any of us despite what may appear to be solid and safe now.

But when and if we do need help, why does the system seem to work so hard not to help those who need it most?

Is it OK to reblog this? I know you have permission from the original author, I want to make sure I have permission too.

Not sure how much I can do, but perhaps, someone who sees my blog may know someone who knows someone……
If not for my husband I would be in the same situation, and we were heading there fast until he just recently found a job.

I have no idea how to find out the steps to take to find help, I would be lost, and as I’ve told my husband many time, if it were not for him I think I would have died on the streets by now. I filed for disability and, of course, was denied the first time. I’m awaiting a hearing now, it has been over a year. I have a lawyer, but I don’t know what to do.

As I say, I’m lucky, I do have help. It isn’t really mentioned in the letter written above, but think of those with mental illness (possibly on top of other health issues), when they hit a road block looking for help they are even less likely to be able to find ways around the system.

And I believe, as she says, “the system is set up to make people quit and, in the macabre sense, to make them die.”

I will gladly reblog this and also send it to others who may have a larger voice than I.

I’ve contacted the author about reposting her letter and she says: “That is so wonderful! Tell people to repost at will. I am glad the message can be spread and discussion can continue.”

You’re so right, Wendy. If a patient struggling with one or more chronic illnesses has a supportive spouse/family, it can make the difference between living in despair and being able to survive. When I applied for my disability benefits through my employer, the first piece of paper in the (thick) file of paperwork is the appeal form – a cruel psychological strategy to warn the applicant that you’ll likely be denied benefits, all during a time when you’re at your lowest point ever or you wouldn’t be filing in the first place!

Exactly, Carolyn, I was dumb enough to think I would surely be approved the first try. I had hundreds of pages of documentation. Many of my friends had been approved on the first try and were not as advanced in the same disease as I.

When it came back that they had no disagreement that I am disabled, they are arguing that I waited too long to file. What? I decided not to ask for government help when I first became disabled, decided to try to work part-time for a while, so now I can’t get disability? That makes no sense!

I have reblogged this, and I have sent this to a friend who I think has a greater voice than I do; my blog posts also go out on facebook and twitter. Hope it reaches someone.

Good grief. It would be nice to have an advance list of their existing stupid fine print loopholes before even bothering to apply. You’d THINK you’d be acknowledged for trying hard, despite your medical condition, to continue in the workforce as long as you could. Good luck with your hearing and thank you, Wendy for publicizing this author’s important letter.

More importantly, it should appear in every professional publication/ website, starting with the Journal of the American Medical Association (JAMA), and including “trade publications” for social workers, nurses, etc., etc.

I couldn’t help comparing this woman’s story to that of my sister: a well-educated woman with multiple health issues who would not have the financial ability to pay for care if she lived in the US. In Canada, she has all her services either subsidized or paid for outright.

Though, as the author mentioned, above, you have to know where to look for those services in Canada too. Yes, our system has its flaws, but we are incredibly fortunate in this country.

Hi Deborah – I too thought immediately how fortunate I am to have had my heart attack here in Canada, where I didn’t have to fret about if I’d be able to pay for world-class cardiac treatment, or follow-up care with my specialists for the rest of my life. Like the author of this post, I’m now living on a modest disability pension because of ongoing health issues, but unlike her, access to good healthcare is not among my worries.

Thanks for this, Cave. I suspect that what none of us are ever prepared for is how one or two major incidents in life can so quickly derail our current comfort. In a previous email conversation with the author of this post, we talked about how she was doing all the right things: she worked hard, went to university (two degrees), volunteered in her community – all while managing a number of serious health issues. She never imagined that one day she would find herself living in poverty.

I am so thrilled by the outpouring for support that this post has received. Like cave76 above, I have lived with the specter of this reality looming over me since my diagnosis with Crohn’s disease at age 13.

My educational and professional choices were shaped, even at that young age, by the knowledge that I would need health insurance and as much money as possible if I were to have any hope of surviving in the US as a person with a serious chronic (incurable) illness.

I’m 33 now and not sure I will ever have a husband to support me, although I have had offers to marry military men or people wanting to gain access to the US. (I’ve turned down the offers.) I’ve considered moving to California where laws allow anyone to be added as the “partner” on a health insurance plan.

I lost my house because I had to choose to pay COBRA health insurance premiums instead of the mortgage. I am lucky that I have been able to move back in with my parents multiple times since college. I’m lucky that I have never been out on the street.

But I’ve lost my home and had to settle for situations that were stressful and ultimately unhealthy for me – all because it was the best I could find/afford at the time. I can very easily understand how women end up staying in unsafe relationships out of a lack of better options. Having a disease that has been progressive (for me) means that the more time that passes, the more likely I am to fall over the edge of the tightrope I walk.

I fear that living in the U.S., there will not be a safety net adequate to catch me.

Thanks very much Carly for sharing your own story here. Losing your home because you needed to pay for COBRA seems an impossible tragedy – and that’s while still trying to manage the day-to-day realities of a debilitating chronic illness! Just keep on holding on . . . Readers: find out more about Carly who is the centerfold feature in the new Crohn’s & Colitis Foundation’s annual report!

Thank you to the author for sharing these truths with us. And thank you, Carolyn, for shining the light and hosting this essay. For me, that’s what we can do: shine a light, however we can, with data, with actions, with conferences that are inclusive, with new vocabulary that honors people’s real experiences.

The more we listen to people, the better we will understand their situation. It seems obvious and yet it’s revelatory. It seems easy to do, but in practice turns out to be quite difficult for organizations to put in place.

I hope the conference organizer she wrote to is able to take action. In case it’s useful, there are models for including “real people” — including the “underserved” — in conference speaker line-ups. Here’s a post from 2008, when I attended the California HealthCare Foundation’s Chronic Disease Care Conference:

Thanks so much for this, Susannah. I love the way Regina accidentally hijacked that Twitter hashtag and then watched #wtfhc take off! Thanks also for the link to your post on the California chronic disease care conference.

You mentioned “6 out of 25 of the panels at this conference” included a patient voice on the panel. That’s six down, 19 to go…. That was in 2008, when you could organize a conference all about chronic disease care and not have chronic disease patients represented throughout. Yet, in 2014 it’s still happening today (as the writer of this guest post observes: a panel on healthcare for the under-served that doesn’t include an actual under-served patient onstage).

UPDATE

♥ For women living with heart disease, from the unique perspective of CAROLYN THOMAS, a Mayo Clinic-trained women's health advocate, heart attack survivor, blogger, author, speaker here on the west coast of Canada 🇨🇦

♥ the news

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